Background: Being next-of-kin to someone with cancer requiring palliative care involves a complex life situation. Changes in roles and relationships might occur and the next-of-kin thereby try to adapt by being involved in the ill person’s experiences and care even though they can feel unprepared for the care they are expected to provide. Therefore, the aim of this study was to develop a classic grounded theory of next-of-kin in palliative cancer care.
Method: Forty-two next-of-kin to persons with cancer in palliative phase or persons who had died from cancer were interviewed. Theoretical sampling was used during data collection. The data was analysed using classic Grounded Theory methodology to conceptualize patterns of human behaviour.
Results: Constructing stability emerged as the pattern of behaviour through which next-of-kin deal with their main concern; struggling with helplessness. This helplessness includes an involuntary waiting for the inevitable. The waiting causes sadness and frustration, which in turn increases the helplessness. The theory involves; Shielding, Acknowledging the reality, Going all in, Putting up boundaries, Asking for help, and Planning for the inescapable. These strategies can be used separately or simultaneously and they can also overlap each other. There are several conditions that may impact the theory Constructing stability, which strategies are used, and what the outcomes might be. Some conditions that emerged in this theory are time, personal finances, attitudes from extended family and friends and availability of healthcare resources.
Conclusions: The theory shows the complexities of being next-of-kin to someone receiving palliative care, while striving to construct stability. This theory can increase healthcare professionals’ awareness of how next-of-kin struggle with helplessness and thus generates insight into how to support them in this struggle.
BACKGROUND: The significance of metaphors for the experience of cancer has been the topic of extensive previous research, with "Battle" and "Journey" metaphors standing out as key. Adaptation to the patient's use of metaphor is generally believed to be an important aspect of person-centered care, especially in palliative care. The aim of this study was to investigate the use of metaphors in blogs written in Swedish by people living with advanced cancer and explore possible patterns associated with individuals, age and gender.
METHODS: The study is based on a dataset totaling 2,602,479 words produced some time during the period 2007-2016 by 27 individuals diagnosed with advanced cancer. Both qualitative and quantitative procedures were used, and the findings are represented as raw frequencies as well as normalized frequencies per 10,000 words. Our general approach was exploratory and descriptive. The Mann-Whitney U test was used to analyze statistical significance.
RESULTS: Our results confirm the strong foothold of "Journey" and "Battle" metaphors. "Imprisonment" and "Burden" metaphors were also used by the majority of the individuals. The propensity to use metaphors when describing the cancer experience was found to differ extensively across the individuals. However, individuals were not found to opt for one conceptualization over the other but tended to draw on several different metaphor domains when conceptualizing their experience. Socio-demographic factors such as age or gender were not found to be strong predictors of metaphor choice in this limited study.
CONCLUSIONS: Using a range of different metaphors allows individuals with advanced cancer to highlight different aspects of their experience. The presence of metaphors associated with "Journey", "Battle", "Imprisonment" and "Burden" across individuals could be explained by the fact that the bloggers are part of a culturally consistent cohort, despite variations in age, sex and cancer form. Awareness of metaphors commonly used by patients can enhance health professionals' capacity to identify metaphorical patterns and develop a common language grounded in the patients' own metaphor use, which is an important requisite for person-centered palliative care.
OBJECTIVES: For patients' entire families, it can be challenging to live with cancer during the palliative stage. However, a sense of coherence buffers stress and could help health professionals identify families that require support. Therefore, the short version of the Family Sense of Coherence Scale (FSOC-S) was translated, culturally adapted, and validated in a Swedish sample.
METHODS: Translation and cross-cultural adaptation of the FSOC-S into Swedish was conducted in accordance with the World Health Organization's Process for Translation and Adaptation of Research Instruments guidelines. Participants were recruited from two oncology clinics and two palliative centers in Sweden.
RESULTS: Content validity was supported by experts (n = 7), persons with cancer (n = 179), and family members (n = 165). Homogeneity among items was satisfactory for persons with cancer and family members (item-total correlations were 0.45 0.70 and 0.55 0.72, respectively) as well as internal consistency (ordinal alpha = 0.91 and 0.91, respectively). Factor analyses supported unidimensionality. FSOC-S correlated (rs > 0.3) with hope, anxiety, and symptoms of depression, which supported convergent validity. The test-retest reliability for items ranged between fair and good (kw = 0.37 0.61).
SIGNIFICANCE OF RESULTS: The FSOC-S has satisfactory measurement properties to assess family sense of coherence in persons with cancer and their family members. FSOC-S could be used to identify family members who experience low levels of perceived family sense of coherence which provides health care professionals with insight into families' needs and ability to live with cancer in the palliative stage.
BACKGROUND: There is evidence indicating that family sense of coherence predicts quality of family life and promotes family well-being. In families living with the palliative phase of cancer, low hope, anxiety and symptoms of depression are common in both persons with cancer and their family members.
AIM: To determine whether family sense of coherence was associated with hope, anxiety and symptoms of depression, respectively, in persons with cancer in the palliative phase and their family members.
DESIGN: An observational, cross-sectional, multicentre study was conducted. Nested linear regression analyses were performed in two blocks to determine whether family sense of coherence was associated with hope, anxiety and symptoms of depression.
SETTING/PARTICIPANTS: Persons with cancer (n = 179) and their family members (n = 165) were recruited from two oncology clinics and two palliative centres in three regions in Sweden.
RESULTS: The main findings showed that family sense of coherence was significantly and independently associated with hope, anxiety and symptoms of depression. Stronger family sense of coherence was associated with higher hope and lower anxiety and symptoms of depression levels in both persons with cancer and their family members.
CONCLUSION: Health care providers should strive to identify families with weak family sense of coherence, because of its associations with hope, anxiety and symptoms of depression, in order to offer them professional support and thereby achieve increased well-being during the palliative phase of cancer. Future studies should expand our knowledge of family sense of coherence and how to identify families at risk of lower levels of well-being.
BACKGROUND: How patients preserve their sense of dignity in life is an important area of palliative care that remains to be explored.
AIMS: To describe patients' perspectives of what constitutes a dignified life within a palliative care context.
METHODS: Twelve palliative care patients were interviewed about their views on living with dignity. Data were analysed using qualitative content analysis.
RESULTS: What constitutes a dignified life during end-of-life care was captured by the theme 'I may be ill but I am still a human being' and presented under the categories 'preserving my everyday life and personhood', 'having my human value maintained by others through 'coherence' and 'being supported by society at large'.
CONCLUSION: Patients' sense of dignity can be preserved by their own attitudes and behaviours, by others and through public support. Health professionals need to adopt a dignity-conserving approach, for which awareness of their own attitudes and behaviours is crucial.
Guided imagery (GI) is a nonpharmacological intervention that is increasingly implemented in different clinical contexts. However, there have been no studies on the effect of GI on the comfort of inpatients of palliative care (PC) units. Therefore, the aim of this study was to evaluate the effects of GI on the comfort of patients in PC. A 1-group, pretest-posttest, pre-experimental design was used to measure differences in heart rate, respiratory rate, pain, and comfort in patients (n = 26) before and after a 2-session GI program. The intervention featuring GI increased comfort, measured by an Abbreviated Holistic Comfort Scale and the visual analog comfort scale (P < .001), and decreased heart rate (P < .001), respiratory rate (P < .001), and pain, as measured by the (numerical) visual analog pain scale (P < .001). This study demonstrates that the use of an intervention featuring GI increases the comfort of oncology patients admitted to a PC unit. The use of GI by nurses is inexpensive, straightforward to implement, and readily available and may result in the provision of comfort care.
BACKGROUND: Despite increased attention and knowledge in palliative care, there is still confusion concerning how to interpret the concept of palliative care and implement it in practice. This can result in difficulties for healthcare professionals in identifying patients whom would benefit from palliative care, which, in turn, could lead to a delay in meeting patients' needs.
AIM: To explore healthcare professionals' perceptions of palliative care.
METHOD: Data were collected through twelve interprofessional focus group interviews in community care and hospital wards in south Sweden (n = 74). All interviews were analysed with latent content analysis.
RESULTS: Three domains were revealed: first, a blurred conceptual understanding as participants described palliative care using synonyms, diagnoses, phases, natural care and holism; second, a challenge to communicate transitions concerned the importance of how and when the transition to palliative care was communicated and documented; finally, a need for interprofessional collaboration was described as well as the consequences for severely ill persons, relatives and healthcare professionals when it was not established.
CONCLUSION: The perceptions about how to interpret palliative care differed as well as when palliative care should be offered and decided, which might have practical consequences. How long a person has left to live is of great significance for decision-making, caregiving and preparation in palliative care. The challenge is to use interprofessional communication to promote understanding and collaborate across varied care levels. Integrating palliative care across diverse care levels could be one way to reduce the ambiguity of palliative care.
Nursing homes are often places where older persons “come to die.” Despite this, death and dying are seldom articulated or talked about. The aim of this study was to explore assistant nurses’ experiences of conversations about death and dying with nursing home residents. This study is part of an implementation project through a knowledge-based educational intervention based on palliative care principles. An ethnographic study design was applied in seven nursing homes, where eight assistant nurses were interviewed and followed in their daily assignments through participant observations. The assistant nurses stated that they had the knowledge and tools to conduct such conversations, even though they lacked the time and felt that emotional strain could be a hinder for conversations about death and dying. The assistant nurses used the strategies of distracting, comforting, and disregarding either when they perceived that residents’ reflections on death and dying were part of their illness and disease or when there was a lack of alignment between the residents’ contemplations and the concept of dying well. They indicated that ambivalence and ambiguity toward conversations about death and dying should be taken into consideration in future implementations of knowledge-based palliative care that take place in nursing homes after this project is finalized.
BACKGROUND: Nursing home residents in Sweden are old, frail and usually have multiple morbidities which often make dying a prolonged suffering. It has been found that older persons at nursing homes receive far less palliative care than younger persons, partly because it is difficult to identify when the final stage of life begins. The identification may help the staff to enable the older person and their families to participate in planning the care in accordance with their own preferences and values. With this in mind the aim was to explore the experiences of early and late signs preceding dying in older persons in nursing homes from the multidisciplinary team's perspective.
METHODS: The focus group method was used to interview 20 health-care professionals on the basis of semi-structured questions. Four focus groups were conducted at four nursing homes in two counties in southern Sweden. The groups included different professionals such as assistant nurses, registered nurses, occupational therapists, physiotherapists, social workers and unit managers. The analysis was conducted according to the focus group method developed by Kruger and Casey.
RESULTS: The analysis revealed one major theme, from unawareness to obviousness, which illustrates that the participants experienced dying as a happening, not a process, and found it difficult to identify early signs. Even though it was a new way of thinking, several suggestions of early signs were presented. The main category "Going into a bubble" illustrates early signs, which meant that the older person showed signs of wanting to withdraw from the outside world. The main category "The body begins to shut down" illustrates late signs, which meant that the older person showed signs that indicate that the body starts to prepare for death.
CONCLUSIONS: This study conveys new knowledge concerning the multidisciplinary team's collective experience of early and late signs that precede dying. This knowledge can increase the understanding of when a palliative care approach needs to be in place at nursing homes. The use of a palliative care approach in care planning requires consensus in the perception of the dying process of frail older persons.
BACKGROUND: The aim of this paper was to describe the development of an intervention that is developed to improve communication about the heart failure (HF) trajectory and end-of-life care. We also present data that provides a first insight in specific areas of feasibility of the intervention.
METHODS: Co-design was used and patients, family members and health care professionals were constructive participants in the design process of the intervention. Feasibility of the intervention was tested in two areas; acceptability and limited efficacy.
RESULTS: Two communication tools were designed and evaluated; 1) a Question Prompt List (QPL) for patients and family members and 2) a communication course for professionals which was web -based with one face-to-face training day with simulation. Data on feasibility was collected with questionnaires that were developed for this study, from the 13 participants who completed the course (all nurses). They reported improved knowledge, confidence and skills to discuss the HF trajectory and end-of-life care. The QPL was evaluated to be a useful tool in communication with patients and family members.
CONCLUSIONS: In a co-design process, future users identified the need for a QPL and a communication course. These communication tools can be used as a dual intervention to improve communication about the HF trajectory and end-of-life care. The QPL can help patients and families to ask questions about the HF trajectory and end-of-life care. The communication course can prepare the professionals to be knowledgeable, confident and skilled to discuss the questions in the QPL. Before the tools are ready for implementation in clinical practice, further studies testing the feasibility of the intervention are needed, including also patients and their families.
Aim and objectives: To describe patients’ experiences of communication about their heart failure prognosis and explore how these experiences affected their preferences for future communication about the prognosis.
Background: Professionals need to discuss about the heart failure prognosis with patients in order to improve their understanding of their illness and address palliative care needs.
Methods: An inductive and exploratory design was used. A total of 24 patients (75% men, 52–87 years of age) in New York Heart Association class I-III from primary outpatient care participated in focus group-, or individual semi-structured interviews. Thematic analysis was used to identify and interpret patterns in the data.
Findings: Two overarching themes, “The message sent” and “Hoping for the best or preparing for the worst”, each with three sub-themes, were discovered during the thematic analysis. Many patients described that professionals had not provided them with any prognosis information at all. Other patients described professional information about prognosis that was given in an either very optimistic or very negative way. However, patients also described situations where professionals had given information in a way that they thought was perfect for them to handle, and in accordance with their preferences.
Conclusion: This study shows that patients have different experiences and preferences for communication about prognosis and uses different approaches in order to cope living with a chronic illness such as heart failure.
BACKGROUND: The demography of the world is changing as the population is ageing. Because of this change to a higher proportion of older people, the WHO has called for improved palliative care for older persons. A large number of all deaths in the industrialised world occur while older people are living in nursing homes and therefore a key question becomes how the principles of palliative care can be implemented in that context. The aims of this study are: a) to describe a model of an educational intervention with the goal of implementing knowledge-based palliative care in nursing homes, and b) to describe the design of the evaluation of the effectiveness regarding the implementation of knowledge-based palliative care.
METHODS/DESIGN: A complex intervention is evaluated by means of a cross-over design. An educational intervention concerning palliative care consisting of five seminars during 6 months for staff and managers has been developed and conducted in 20 nursing homes in two counties. Before the intervention started, the feasibility was tested in a pilot study conducted in nursing homes not included in the main study. The intervention is evaluated through a non-randomized experimental design with intervention and control groups and pre- and post-assessments. The evaluation includes older persons living in nursing homes, next-of-kin, staff and managers. Data collection consists of quantitative methods such as questionnaires and register data and qualitative methods in the form of individual interviews, focus-group interviews and participant observations.
DISCUSSION: The research will contribute to new knowledge about how to implement knowledge-based palliative care in a nursing home setting. A strength of this project is that the Medical Research Council framework of complex intervention is applied. The four recommended stages, Development, Feasibility and piloting, Evaluation and Implementation, are combined for the educational intervention, which functions as a strategy to achieve knowledge-based palliative care in the nursing homes. Implementation is always a question of change and a good theoretical understanding is needed for drawing valid conclusions about the causal mechanisms of change. The topic is highly relevant considering the world's ageing population. The data collection is completed and the analysis is ongoing.
TRIAL REGISTRATION: NCT02708498 .
Providing palliative care involves serious challenges for nurses, such as end-of-life decisions, contact with people’s suffering and dying, and increased risk of burnout. However, studies have revealed that the burnout level of health professionals working in palliative care is lower than that of health professionals working in other settings. This study aimed to describe the lived experiences of nurses caring in a palliative care unit. A phenomenological descriptive study was undertaken. Nine nurses were recruited from a palliative care unit in Portugal. Data were collected using individual interviews and analyzed following the method of Giorgi. Five themes reflect the essence of the lived experience: (1) experience centered on the relationship with the other (ie, the patient and the family), (2) experience centered on the relationship with one’s own self, (3) exhausting experience, (4) rewarding experience, and (5) the team as a pillar. These findings can be valuable for understanding the challenges and strategies experienced by nurses caring in palliative care and for designing interventions that focus on reducing the risk of burnout among nurses - not only those working in palliative care but also those working in other contexts who experience regular contact with suffering and death.
A systematic review, using the guideline of the Joanna Briggs Institute, was conducted to explore the effect of working in palliative care settings, compared with other settings, on burnout among health care professionals. Multiple databases were searched—CINAHL, PubMed, Scopus, and SciELO—as well as gray literature for studies published since 1975 that compared health professionals caring for patients older than 18 years in specialized palliative care settings (palliative care units, home care, or hospices) with health professionals working in other settings. Of the 539 studies retrieved, 7 cross-sectional studies were included in this review. Of these, six were conducted with nurses, and six used the Maslach Burnout Inventory. Working in palliative care (palliative care unit or hospices) was associated with lower levels of emotional exhaustion and depersonalization, as well as higher levels of personal accomplishment, compared with working in other settings. Evidence indicates that burnout levels seem to be lower among professionals working in palliative care compared with professionals working in other settings. Further research is needed to explore the strategies used by nurses working in palliative care that help them deal with burnout and to apply these same strategies to professionals working in other settings.
This study aimed to illuminate aspects of familial interactions when one member is in the palliative phase of his/her cancer course. An individual cancer diagnosis influences the entire family, often requiring daily life changes for all members. Current research has examined individual family member perspectives; family system nursing studies are warranted. Narrative family interviews were conducted on 13 families living with cancer. The interviews were transcribed and analyzed according to a hermeneutic method. Analyses revealed the following: Family interaction patterns were adjusted in response to changes in family life, which encompassed 3 different, but interrelated, patterns: (1) power dynamics in the family, (2) the “secret game” in the family, and (3) multifaceted closeness and distance in the family. It is crucial to adopt a family perspective during palliative care to meet each unique family's needs. Health care facilitators should be aware of the complex dynamics and challenges that these families encounter. This will help obtain a greater understanding of factors underlying effective palliative care.
BACKGROUND: More than ever, the current increasing need for palliative care leads to health professionals providing this type of care which further leads to multiple challenges, and stressful and demanding situations. The multiple challenges of working in palliative care put health professionals working in this context at the risk of burnout.
OBJECTIVES: To examine the evidence on the prevalence of burnout among health professionals working in palliative care.
INCLUSION CRITERIA TYPES OF PARTICIPANTS: The current review included studies that encompass qualified health professionals working in palliative care, caring for patients 18 years of age or older. CONDITION: The current review considered studies reporting on the point prevalence of burnout, measured by a burnout scale, such as, but not limited to, the Maslach Burnout Inventory, Burnout Measure and Copenhagen Burnout Inventory.
CONTEXT: The current review considered studies conducted in the context of specialist palliative care, more specifically, palliative care units, specialized palliative home care or hospices.
YPES OF STUDIES: The current review considered observational study designs, including prospective and retrospective cohort, case-control and cross-sectional studies.
SEARCH STRATEGY: An initial search of MEDLINE (via PubMed) and CINAHL was undertaken, followed by a second search for published and unpublished studies since 1975 in major healthcare-related electronic databases. Studies written in English, Spanish and Portuguese were included.
METHODOLOGICAL QUALITY: Two independent reviewers assessed the methodological quality of studies using the standardized critical appraisal instrument from the Joanna Briggs Institute. No studies were excluded from the review based on the methodological appraisal.
DATA EXTRACTION: Data were extracted using a data extraction table, taking into account the review questions.
DATA SYNTHESIS: Significant differences were found between condition measures, thus we were unable to perform a meta-analysis. RESULTS: Eight cross-sectional studies met the inclusion criteria, with a total of 1406 health professionals. The sample was limited to nurses, physicians and social workers. None of the included articles presented data about other health professionals. Seven of the included studies assessed the prevalence of burnout using the same instrument - the Maslach Burnout Inventory. Data revealed a prevalence of burnout of 17.3% among health professionals. Personal Accomplishment was the sub-scale from the Maslach Burnout Inventory that had the highest prevalence (19.5%). Nurses had higher levels of Emotional Exhaustion (19.5%) and Depersonalization (8.2%), and physicians had lower levels of Personal Accomplishment (41.2%). The prevalence of burnout was, however, higher in social workers (27%). The palliative care context with the highest prevalence of burnout was home care (19.6%). CONCLUSION: The current systematic review contributes to a body of empirical knowledge that can facilitate the professional development of palliative care teams by highlighting the prevalence of burnout in health professionals, which staff category is the most affected (social workers), and which palliative care context has the highest prevalence (home care).